“When twenty-nine-year-old Brittany is diagnosed with a terminal brain tumor, she thinks almost immediately about ending her life with dignity…In this painfully honest memoir, Deborah, Brittany’s mother, records the surgeries, treatments, and soul-searching that went into honoring Brittany’s path…Brittany’s story…will have a ready audience, and Deborah’s frank account of their struggles will be comforting to others facing this difficult decision.” —Booklist (starred review)
Written by Deborah Ziegler, the mother of Brittany Maynard—a twenty-nine-year-old woman with a terminal brain tumor—this touching and beautiful memoir captures and celebrates her daughter’s spirit and the mostly untold story of Brittany's last year of life as she chose her right to die with dignity, a journey that inspired millions.
On October 6, 2014, a video of my daughter, Brittany Maynard, was posted on YouTube. Brittany asked me to do the video with her, to support her. The first words my daughter uttered on the film were, “The thoughts that go through your mind when you find out you have so little time is everything you need to say to everyone that you love.” Wearing a simple black sweater, her face already rounded and puffy from taking prescribed steroids, her once waist-length hair now grazing her shoulders after a craniotomy, Brittany described why she was choosing to end her life by her own hand rather than waiting for her brain tumor to rob her of everything that defined who she was.
In this poignant, powerful book, Deborah Ziegler makes good on the promise she made to her only child: that she would honor her daughter and carry forward her legacy by sharing their story and offering hope, empowerment, and inspiration to the growing tens of millions of people who are struggling with end-of-life issues.
|Publisher:||Atria/Emily Bestler Books|
|Product dimensions:||6.20(w) x 9.10(h) x 1.40(d)|
About the Author
Deborah Ziegler was born in Albuquerque, New Mexico on July 18, 1956. She currently lives in California with her husband, Gary, and two cavipoos named Bogie and Bacall.
Read an Excerpt
Wild and Precious Life
December 31, 2013—January 1, 2014
The worst moments in life are heralded by small observations.
— Andy Weir, The Martian
The first step in leaving the world I formerly inhabited was more like a jarring shove. Not a tiny toe-out-the-door kind of move. Instead, I was cruelly pushed into a new life.
Late New Year’s Eve of 2013, when Brittany should have been dining and dancing, my son-in-law called me from an ambulance. Dan said that Brittany had a very bad headache. They had gone to a hospital, where a CT scan revealed a shadow on her brain. Since the hospital didn’t have an MRI, they were now heading to a larger one that had the proper equipment.
“Should I try to get on a flight tonight? I’m not sure there are any middle-of-the-night flights to Oakland.”
Dan responded that she’d have to do admittance tests and take the MRI, so tomorrow morning would be fine. He put my daughter on the phone.
“Momma, my head hurts so bad,” Britt said, her voice thick and slurred from the effects of pain medication. “They took a CT scan and found a shadow on my brain. It might be a brain tumor.”
My heart dropped as my mind refused to accept this possibility. “Don’t jump there, darling. Don’t draw any premature conclusions. Baby, I’m coming. I’ll see you tomorrow.”
Gary booked my airline ticket as I haphazardly threw clothes into a suitcase. “Follow your own advice,” Gary said. “Don’t jump to any conclusions. I’ll make arrangements for someone to check on your father and stay with the dogs. Then I’ll come up later.” He held me by the shoulders. “Try to get some sleep tonight. You’ll need to arrive rested.”
As I flew to Oakland from San Diego the next morning, I wondered what might have created a shadow on Brittany’s brain. My daughter with a brain tumor? It just wasn’t possible.
Brittany had always been a healthy, active child. Over five feet nine, she positively exuded strength and vigor. As I looked out the plane’s window at the cloudless sky, images clicked through my mind like a silent slide show:
Three years old. Feet up on the dash of her toy ride-on car, screaming in delight. “Faster, Momma, faster!”
Preschool. Curly hair hiding her face, dangling upside down on the monkey bars. “Look at me! Momma, look at me!”
First grade. Bent over homework, Britt printing her letters over and over until she developed a pressure bump from bearing down on her fat beginner pencil.
Elementary school. Green eyes gleaming, Britt as Princess Jasmine sang her solo parts as clear as a bell. Back and forth with the boy playing Aladdin, she fearlessly belted out lyrics about taking a free-spirited flight through a glittering sky. Trilling perfectly on key, she stretched out her arms to the beaming audience. How prophetic this song about seeing amazing sights would be, although Britt would never need an Aladdin to escort her anywhere.
Preteens. Tumbling, cheering, and ice skating her way through middle school, effortlessly excelling at sports.
High school. Alternately crashing and soaring, Britt spiraled into wild rebellion as she fought for autonomy. With almost waist-length honey-brown hair and a smile that knocked the breath out of boys, she skipped school with gleeful abandon, yet somehow always excelled scholastically.
Young adulthood. A trip to Costa Rica to work on a women-owned farm filled Britt with a deep yearning to volunteer, to experience wild places, and to engage in adrenaline-producing activities. It was the first sign of the trekking, bungee-jumping, stranger-befriending young woman that she became.
As I flew toward my sick daughter, I envisioned her startling white smile, muscular legs, and powerful arms as she winged upward and plummeted, freewheeling, through life. I imagined her long tanned legs glistening in the white foam of a waterfall as she rappelled down slippery rock. I pictured my girl in a life vest and helmet, white water almost obscuring the raft, Britt the only occupant who somehow managed to grin impishly at the camera while everyone else grimaced and paddled furiously. I imagined the sound of her laugh—the very best sound I’ve ever heard—as she jogged across a hanging bridge, deliberately setting it in motion to unsettle others in the group.
I could not picture Britt lying still and quiet in a bed. My daughter was definitely more of a magic carpet girl.
Brittany’s mother-in-law, Carmen, picked me up at the airport. We hugged, her compact frame rigid as she squeezed me hard. She drove me to the hospital where my only child slept on crisp white sheets in the Neuroscience ICU.
Carmen told me that they would get a clear MRI today, since the previous hospital only captured a fuzzy image with their CT scan. Her voice was precise, with the charming hint of a Cuban accent that I found endearing. Carmen and her husband, Barry, had bonded with me and Gary at our kids’ engagement lunch. Carmen added that Barry was taking care of Britt and Dan’s dogs, Charley and Bella. I thought of kind, strong Barry and how the dogs immediately calmed down in his presence. The whole family called him the “dog whisperer.”
Carmen and I loved our children fiercely. Dan was Carmen’s pride and joy, just as Brittany was mine.
I didn’t know then that an MRI is the investigative tool of choice for neurological cancers. Carmen and I were silent for a few minutes as she negotiated traffic. “What does a shadow on the brain mean?” I asked.
Carmen replied that she didn’t know, but that Dan would explain when we got there. In the quiet of the van, I prayed silently all the way to the hospital. Brittany had been complaining of headaches for almost a year. Were they migraines? Stress headaches? Sinus headaches? She and I had posed many hypotheses as to what might be triggering the increasingly debilitating pain. Sometimes at night the throbbing of her head was so all-encompassing that all Brittany could think to do was go sit in the shower with warm water pouring down on her neck and head. I had looked online, but there were hundreds of potential reasons.
Brittany tried avoiding wine. She made sure she exercised regularly. She avoided nitrates, and bought farm-fresh, organic foods. Was it our imagination that the headaches seemed to get better when she visited me and Gary in Southern California?
Brittany had bought a Great Dane puppy to join Bella, her needy rescued beagle, soon after marrying Dan in late September of 2012. She said she was lonely living in Northern California, and longed for a puppy to keep her company. Had the teething Charley caused stress?
Soon after her wedding, Brittany saw a neurologist. She chose him because he had training in both Eastern and Western medicine, and he advertised a holistic approach. Although Brittany described the headaches as coming on when she went to bed, severe enough to make her vomit, the doctor told Brittany that she was having “women’s headaches” and that they might get better when she had a baby. Brittany was a bit insulted by this, thinking that he was suggesting that the headaches were potentially a combination of newlywed stress and hormonal imbalance. I didn’t dare say it, but I thought he might be right.
Later, Britt and I discussed the fact that this neurologist hadn’t ordered an MRI and caught her growing tumor. He missed a couple of glaring pieces of information. The headaches grew worse when Britt was lying down. It was at night that the pain caused her to forcefully throw up and to seek the refuge of a warm shower. But we also were told by other neurologists (do they always defend one another?) that a hundred million Americans report bad headaches each year, with 35 million of those experiencing migraine-level headaches. If doctors ordered an MRI for all of these patients, the medical system would go bankrupt. So our anger and desire to write a blistering letter died away with time. There was so much else to deal with—we had to let go and keep moving forward.
The doctor also encouraged her to avoid too much caffeine, red wine, processed meat, MSG-laden foods, and artificial sweeteners, as all of these things can trigger headaches. Brittany became very averse to the use of artificial sweeteners and adamantly opposed my use of sugar-free flavored coffee creamers.
He prescribed subcutaneous injections of pain medication, a selective serotonin receptor antagonist used to narrow blood vessels around the brain. It is a medication used for migraine headaches. Britt would find a place at the top of her thigh, wipe the area with an alcohol pad, and use an auto-injector pen. But the injections hadn’t helped. “Are you going to tell him the medication isn’t helping?” I asked.
“I don’t know. Maybe I need to give them a chance.” Britt changed the subject before I could jump in with more advice. “Mom, why don’t you fly up here? I’m trying to find someone to go shark diving with me.”
“Oh my god. No, I don’t want to go shark diving.”
“We’d take a boat out to San Francisco’s Farallon Islands, where it’s common to see a great white the size of a car! You could just watch them from the boat. I’ll go down in the great white cage.”
“I would meet you for a few days’ retreat and massages. How about that?”
“You’re such a mom. You’ve gotta break out of this wine and massage thing,” she said, teasing me. “You know what that big galoot, Charley, did now? He ate both of my retainers. That’s $750 dollars of orthodontic products down the hatch.”
I hung up thinking the headaches couldn’t be too big a problem if she wanted to go shark diving.
Now, on January 1, 2014, as I sat next to Carmen in her immaculate van, I wondered what a shadow on the brain might be. Could fluid cause a shadow? Could it be a blood clot? I refused to even think of the word “tumor.”
That was highly unlikely; not even a concern, I told myself. No one would refer to a tumor as a “shadow.” Could it be an infection of some kind? Although I tried to convince myself that we would get to the bottom of the headaches and then take Brittany home, deep inside me a warning sounded. Not a blaring mechanical siren; more like the muffled, mournful tones of a foghorn. This sorrowful pulse of warning stayed with me. I hear it even now, when night falls and I find myself thinking too much.
Carmen pulled into the parking lot of a sprawling, modern glass building, and we hurried to check in at the main desk. On the second floor, we sat in a small waiting room. Since only two visitors were allowed at a time, Dan would escort me back to the ICU while Carmen waited there.
Dan appeared in the doorway. I rushed over and gave him a hug. He reported that there was a large shadow on her brain, that they had scheduled more tests, and that she was awake. His calm demeanor made me feel less agitated.
Dan announced our names into a squawk box, and we were buzzed in. I scanned the glass windows in the rooms we passed, looking for my daughter. The hulking equipment in the rooms overwhelmed me; my eyes were already flooding with tears. Patients were connected to ominous machines that blinked and beeped.
Dan turned to enter a room, and I saw her. A nurse held Brittany’s shoulders up, but her head was lax, elegant long neck arched back, dark hair stark against a crisp white pillowcase. The doctor repeated her name in a loud and urgent tone. “Brittany, wake up! Brittany!” Her eyes were closed, and she didn’t respond. In the background, one of the machines beeped endlessly, flashing a red number that meant nothing to me. The doctor pried Britt’s eyelid open and shone a tiny flashlight in her pupils. She didn’t react.
I hurried to her bedside and touched her hand, but didn’t pick it up as two IV lines were taped to the back. “Brittany, darling. Momma’s here. Wake up.” I spoke loudly, leaning toward her ear. “Wake up, darling! Momma’s here.” Tears streamed down my face. “Sweet Pea, I’m here.” I willed her to recognize my voice and come to.
Dear God, she’s dead, I thought as my knees wobbled. I didn’t get to say goodbye.
What were they saying—something about me? Someone was pulling at my arm. Dan and I were being ordered out. A nurse jostled past us.
In the waiting room, I fell to my knees. “Take me,” I begged. “Take me. Not her, not her!”
My entire face was soaked with tears. A thin sheen of perspiration dampened my hairline. I couldn’t breathe. I felt like something vital had been ripped out of me.
Carmen came near and rubbed my back. I looked through blurry eyes into her troubled face. I felt I was operating on a primordial level, like a mother wolf separated from its pup. The most primitive part of me needed to stand vigil over my child. “I need to call Gary,” I gasped.
Carmen got her cell phone and searched for his number.
Dan slumped on a chair. With a perplexed expression, he said that he’d heard them order Narcan, a drug used with drug addicts who have overdosed.
“Who ordered what?” I stopped whimpering and tried to focus. “The doctor overdosed her?” I asked and began to cry again as Dan strode out of the room on a quest to find out why Britt had been given Narcan.
Carmen held the cell phone against my ear and I heard it ringing. I grasped the phone. Gary’s voice broke my last bit of reserve.
“Come now,” I sobbed into the phone. “Britt’s bad. Very bad. I need you.”
“Honey, slow down. I can’t understand.” Gary’s voice faded as I handed the phone back to Carmen.
I gave in to a guttural noise building from deep within. An animal-like howl erupted as I rocked back and forth on the floor.
My wails had quieted to sobs by the time Dan returned to the waiting room, a smile on his face. Brittany was conscious. The Narcan had worked.
I followed him down the hallway, where someone opened the double doors to let us in again.
The curtain to Britt’s room was drawn, and the room was dimly lit. Machines blinked numbers, but nothing beeped a warning. The nurse said we must follow the brain injury protocol written on the whiteboard. “Dim light. No television. Speak softly.” Brittany sat propped up at an angle.
“This angle must be maintained at all times,” the nurse warned us. “Don’t lower the head of the bed.”
I approached Brittany and softly said, “It’s Momma, Britt. Momma’s here.” I touched her hair.
Britt opened her eyes. Her pupils, tiny pinpoints, focused on me. One eye opened wider than the other. The heavy eyelid fluttered.
“I’m sorry, Momma,” she whispered. “I’m not going to be able to take care of you when you’re old, the way you take care of Grandpa.” Tears welled up and rolled down her face. “I’m not going to live that long.”
Where had this thought come from? Watching me care for my elderly father for the last three years? I touched her flushed cheek. “Hush, sweetness. Just rest. Everything will be all right. I’m here now. Momma’s here.” These words rushed out in a loving whisper, but the mournful warning continued to sound rhythmically inside me. I tucked her tangled hair behind her ear.
“I feel so bad. I want these out.” She tried to reach for the IV lines, but it was as though she couldn’t see where her hand was.
“Let’s leave them in for now.” I stroked her hair as Dan untangled each of the four lines running into Britt. He gently laid them out straight on her bed.
Dan talked to Brittany about keeping the lines in. “What happened?” I whispered to the nurse.
She couldn’t seem to meet my eyes. “Oh my, yes. Well, we’re not sure. She might have had a seizure.”
My hackles rose. “But she was unconscious, not jerking.” I didn’t buy this explanation. “She’s never had a seizure.”
The nurse patted my back. “Well, nevertheless, it was a terrible way to see your daughter when you first arrived. Don’t you worry, all of her stats are fine now.” She busied herself punching buttons on the machines, and then bustled out of the room.
Dan left to update Carmen.
I was trying to determine if the nurse was someone who could be trusted around my child. My daughter was of me, and a great deal like me, but younger, smarter, prettier. She was the hope of my heart. She embodied the grandchildren I eventually hoped to have. She was the promising career, the result of the excellent university education I’d scrimped and saved for. She didn’t owe me these things; she was already all of this, and more. She was my only child—my everything.
Sitting next to her bed, I felt old, even ancient. I felt my youth slipping away, my future sliding away, the rest of my life tumbling into oblivion. Inside my gut, I knew that Brittany, my baby, was going to die. Looking back, I realize that my animal instinct discerned this. However, the thin veneer of my purportedly superior human knowledge denied it. Everything I’d learned in the fifty-seven years of my life—from my parents, schools, and life experiences—told me to keep that mask of human superiority on and deny the warning whimper inside.
Science. Medicine. They would save Brittany. Or perhaps God, through a doctor using science and medicine, would save Brittany. Yes, a combination of faith and science and medicine would be unbeatable. Or so I told myself.
As I watched my daughter sleep, I felt no different, no less awed, than the day the obstetrician held her slippery naked body above me.
“It’s a girl,” the nurse announced, holding what looked like a tiny Martian near my head.
In that instant, I felt a love like nothing else in the world. I would have ruthlessly crushed anyone trying to hurt my baby. My daughter hadn’t been outside my womb five minutes, yet I knew I would die for her if need be. It was as though a switch has been thrown, and from that moment forward I would think constantly about her welfare. I was already fixated on keeping her warm and safe, guarding her against danger.
Later, the nurse rolled a bassinet into the room. Inside was the most beautiful, tiny creature I’d ever laid eyes on. Her head was perfectly shaped, not flattened or pointed by having to pass through the birth canal, since I’d had an emergency C-section. She had dark hair and gorgeous skin, as though she’d been born with a tan. I loved my child with a fierce protectiveness that altered me forever.
Brittany Lauren was the name I chose for my baby in November 1984. I thought it was original; my mother was British, and its Celtic meaning was “from Britain.” In truth, I’d fallen in love with a name that would become one of the most popular girl’s names in the eighties.
A breech baby, Brittany arrived via cesarean because although I was already in labor the hospital classified first-baby breech births as “high risk.” My obstetrician told me I’d have to go to a different hospital if I wanted to try to deliver naturally. Brittany kicked hard and broke my water almost a full month early, avoiding, by one day, a painful procedure whereby the doctors would have tried to turn her manually. She was born with mild dysplasia, a hip click. She looked tan because she had newborn jaundice. She was absolutely perfect.
Now standing beside my adult daughter’s bed, again I felt my body and soul go through extremely powerful reactions, as I had postnatally. Brittany lay there, helpless and in pain. Disease threatened her brain. She was in danger, and just as when she was a newborn, I realized I would die for her.
However, a willingness to die for one’s child was, in this instance, of absolutely no use. There was no such thing as a brain transplant. I sat next to my beautiful girl repeating a useless circular prayer of “Take me, not her. Take me . . .” This begging, this entreaty, didn’t make any sense; it didn’t make any difference, and didn’t calm me in any way. But I couldn’t stop.
Table of Contents
Part 1 Catastrophe 1
1 Foreboding 3
2 Bad News 15
3 Willful Child 29
4 Not on the Same Page 35
5 The Two of Us 43
6 Promises 51
7 Sweet Pea 59
8 Craniotomy 65
Part 2 Renunciation 75
9 Denial 77
10 Middle Years 83
11 Recovery 93
12 High School Hell 109
13 Bad Mother 127
14 Spreading Wings 141
15 It Can Always Get Worse 147
Part 3 Epiphany 159
16 First Love 161
17 No Cake for You 169
18 Berkeley Girl 183
19 Living in the Moment in Alaska 191
20 Changing Her Mind (A Woman's Prerogative) 201
21 Making a Nest to Die In 207
22 Playing House 225
23 Love You Hate You 233
24 Free Bird 245
25 Pre-Grief Is a Nasty Bitch 255
26 Mountain Climbing and a Wedding 263
27 Twenty-Nine Years 271
28 Married Lady 289
29 I Want Her Back 297
30 Dust to Dust 307
Epilogue: Machu Picchu 321